Building my life after the devastating effects of Necrotizing Fasciitis
(The Flesh Eating Bacteria)

Sunday, July 14, 2013

A humble and understanding doctor

This was sent to me by a dear friend who always cares so much for me.
When I read it, and Robert also, it created in me just a sense of
"FINALLY, someone wrote it, finding the right words to express it!" Some
of this stuff I have been trying to write about for years, but for one
reason or another (not always lack of words- that isn't often my problem
when I am writing, thank Gd) I couldn't put it in a way that felt
right. I write sometimes saying "you can't understand unless you've been
here"...But when I read this piece, it was like "Bingo! That's IT!" I
wish I had him for a doctor. After you read this, you will also wish I
had him for a doctor. :)

I just
happened to see this pic in my computer files; me & my hubby at a
lovely lake about 45 mins from home. I was looking for one taken with
my friend who sent me this article, but, Hanna- I can't find any of us
together! Gotta remedy that...

A Letter to Patients With Chronic Disease

by Rob on July 14, 2010 [I just now noticed that it was exactly 3 years ago!]

Dear Patients:

You
have it very hard, much harder than most people understand. Having sat
for 16 years listening to the stories, seeing the tiredness in your
eyes, hearing you try to describe the indescribable, I have come to
understand that I too can’t understand what your lives are like. How do
you answer the question, “how do you feel?” when you’ve forgotten what
“normal” feels like? How do you deal with all of the people who think
you are exaggerating your pain, your emotions, your fatigue? How do you
decide when to believe them or when to trust your own body? How do you
cope with living a life that won’t let you forget about your frailty,
your limits, your mortality?

I can’t imagine.

But
I do bring something to the table that you may not know. I do have
information that you can’t really understand because of your unique
perspective, your battered world. There is something that you need to
understand that, while it won’t undo your pain, make your fatigue go
away, or lift your emotions, it will help you. It’s information without
which you bring yourself more pain than you need suffer; it’s a truth
that is a key to getting the help you need much easier than you have in
the past. It may not seem important, but trust me, it is.

You scare doctors.

No,
I am not talking about the fear of disease, pain, or death. I am not
talking about doctors being afraid of the limits of their knowledge. I
am talking about your understanding of a fact that everyone else seems
to miss, a fact that many doctors hide from: we are normal, fallible
people who happen to doctor for a job. We are not special. In fact,
many of us are very insecure, wanting to feel the affirmation of people
who get better, hearing the praise of those we help. We want to cure
disease, to save lives, to be the helping hand, the right person in the
right place at the right time.

But chronic unsolvable
disease stands square in our way. You don’t get better, and it makes
many of us frustrated, and it makes some of us mad at you. We don’t
want to face things we can’t fix because it shows our limits. We want
the miraculous, and you deny us that chance.

And since
this is the perspective you have when you see doctors, your view of
them is quite different. You see us getting frustrated. You see us
when we feel like giving up. When we take care of you, we have to leave
behind the illusion of control, of power over disease. We get angry,
feel insecure, and want to move on to a patient who we can fix, save, or
impress. You are the rock that proves how easily the ship can be sunk.
So your view of doctors is quite different.

Then
there is the fact that you also possess something that is usually our
domain: knowledge. You know more about your disease than many of us do –
most of us do. Your MS, rheumatoid arthritis, end-stage kidney
disease, Cushing’s disease, bipolar disorder, chronic pain disorder,
brittle diabetes, or disabling psychiatric disorder – your defining pain
- is something most of us don’t regularly encounter. It’s something
most of us try to avoid. So you possess deep understanding of something
that many doctors don’t possess. Even doctors who specialize in your
disorder don’t share the kind of knowledge you can only get through
living with a disease. It’s like a parent’s knowledge of their child
versus that of a pediatrician. They may have breadth of knowledge, but
you have depth of knowledge that no doctor can possess.

So
when you approach a doctor – especially one you’ve never met before –
you come with a knowledge of your disease that they don’t have, and a
knowledge of the doctor’s limitations that few other patients have. You
see why you scare doctors? It’s not your fault that you do, but
ignoring this fact will limit the help you can only get from them. I
know this because, just like you know your disease better than any
doctor, I know what being a doctor feels like more than any patient
could ever understand. You encounter doctors intermittently (more than
you wish, perhaps); I live as a doctor continuously.

So
let me be so bold as to give you advice on dealing with doctors. There
are some things you can do to make things easier, and others that can
sabotage any hope of a good relationship:
Don’t come on too
strong – yes, you have to advocate for yourself, but remember that
doctors are used to being in control. All of the other patients come
into the room with immediate respect, but your understanding has torn
down the doctor-god illusion. That’s a good thing in the long-run, but
few doctors want to be greeted with that reality from the start. Your
goal with any doctor is to build a partnership of trust that goes both
ways, and coming on too strong at the start can hurt your chances of
ever having that.
Show respect – I say this one carefully, because
there are certainly some doctors who don’t treat patients with respect –
especially ones like you with chronic disease. These doctors should be
avoided. But most of us are not like that; we really want to help
people and try to treat them well. But we have worked very hard to earn
our position; it was not bestowed by fiat or family tree. Just as you
want to be listened to, so do we.
Keep your eggs in only a few
baskets – find a good primary care doctor and a couple of specialists
you trust. Don’t expect a new doctor to figure things out quickly. It
takes me years of repeated visits to really understand many of my
chronic disease patients. The best care happens when a doctor
understands the patient and the patient understands the doctor. This
can only happen over time. Heck, I struggle even seeing the chronically
sick patients for other doctors in my practice. There is something
very powerful in having understanding built over time.
Use the ER
only when absolutely needed – Emergency room physicians will always
struggle with you. Just expect that. Their job is to decide if you
need to be hospitalized, if you need emergency treatment, or if you can
go home. They might not fix your pain, and certainly won’t try to fully
understand you. That’s not their job. They went into their specialty
to fix problems quickly and move on, not manage chronic disease. The
same goes for any doctor you see for a short time: they will try to get
done with you as quickly as possible.
Don’t avoid doctors – one of
the most frustrating things for me is when a complicated patient comes
in after a long absence with a huge list of problems they want me to
address. I can’t work that way, and I don’t think many doctors can.
Each visit should address only a few problems at a time, otherwise
things get confused and more mistakes are made. It’s OK to keep a list
of your own problems so things don’t get left out – I actually like
getting those lists, as long as people don’t expect me to handle all of
the problems. It helps me to prioritize with them.
Don’t put up
with the jerks – unless you have no choice (in the ER, for example), you
should keep looking until you find the right doctor(s) for you. Some
docs are not cut out for chronic disease, while some of us like the
long-term relationship. Don’t feel you have to put up with docs who
don’t listen or minimize your problems. At the minimum, you should be
able to find a doctor who doesn’t totally suck.
Forgive us –
Sometimes I forget about important things in my patients’ lives.
Sometimes I don’t know you’ve had surgery or that your sister comes to
see me as well. Sometimes I avoid people because I don’t want to admit
my limitations. Be patient with me – I usually know when I’ve messed
up, and if you know me well I don’t mind being reminded. Well, maybe I
mind it a little.

You know better than anyone that we
docs are just people – with all the stupidity, inconsistency, and
fallibility that goes with that – who happen to doctor for a living. I
hope this helps, and I really hope you get the help you need. It does
suck that you have your problem; I just hope this perhaps decreases that
suckishness a little bit.

Post Script:
This post has generated a huge amount of conversation and interest (as
witnessed by the large number of comments!). I very much appreciate the
dialogue it has spawned both here and across the web. I’ve subsequently
written follow-up posts explaining my thoughts in more detail – largely
in response to the comments here. One of them discusses in more detail
my own experiences as a doctor and the second talks of the importance of knowing and being known. Reading these will give you a better picture of my thought process and perspective on this.
Dr. Rob

6 comments
:

I want to spread it around, my mom and a couple of friends would benefit so from it. I have a problem, when I try to copy from your blog I paste it with the green in the back. Would u pls be willing to email it to me so I can also post it in my medical coaching facebook and group? I think it is brilliant, and finally, like a breath of fresh air!!

my whole family in Montreal. went to the same family practitioner who knew the family history and common problems. Here I am all alone and no one relates to things I know I need to be on the look out for-this article is an interesting perspective on a doctor's "humanness".

About me and the blog

This blog is about the hard stuff that has happened to me since I got sick... very sick, in 2007. When you read it, please know also that there is lots and lots of GOOD, amazing, miraculous things in my life. I need this blog, however, to get out the hard stuff.
That hard stuff started out with a simple run-of-the-mill surgical procedure to fix a small hernia I had. I was completely healthy before that. Four days after the operation, I was readmitted to the hospital in tremendous pain. Nobody knew what was wrong, some nurses didn't even believe my pain was that bad. Tests were done, nothing was noticed. A few days later I was taken in for an exploratory surgery to see if the source of the problem could be identified.
The next thing I knew after going under for the exploratory surgery was that I woke up many days later, from a coma, completely unable to move my body or communicate.
I slowly learned that I almost died from the “flesh eating bacteria”, Necrotizing Fasciitis. I had suffered tremendous bodily damage, but survived.
From that point on, my life has been taken over by medical problems, more diseases, many more surgeries and so much pain.
When asked what I do, I say I am no longer able to work, but I am an orchestra musician, I play french horn, and I am a birth doula. Since 2008, however, I have not been able to work.
I am blessed to be able to raise my four beautiful children and continue life with my loving husband, Robert. That is indeed my life's work. When I got sick, I was 39, and my kids ranged in age from 1 + ½ to 7. It has been an amazing, tremendously difficult journey we have all been on. I invite you to randomly read blog entries from this blog, as well as the CaringBridge blog, which can be found on a button under this write-up.
I appreciate all your letters and feedback either personally or on my blog. The support and encouragement I feel from my readers is the fuel for my writing. I thank you for joining my journey!

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"footbridge", by Ruth Gresser

Getting from one side to the other is where we find the colorful part of living...

People, Places & Things

Robert= husband, friend, anchor, ezer k'negdo.

Dov= oldest child, boy variety

Ya'akov= 2nd child, also boy variety

Shifra= 3rd child, girl variety

Azriel (Wazi)= 4th child, again, boy variety

Emma= my dog. We adopted her while she was pregnant (how else does a dog get to Sarah?), she had her 7 puppies here in our garden, we raised them for 3 months, and then one-by-one gave them away to new homes. We have Emma with us now, a dearly beloved part of our family.

Gapey= the large (26cm x 13cm, or 11in. x 6in.) wound on my left upper thigh/lower belly/groin after the debridement surgery took out all skin layers, parts of muscle & ligament

Scrapey= the other wound; the area all around my right thigh where the skin was taken in rectangular patches for the graft which was used to close gapey.

Shapey= the odd shape on my left outer thigh which was caused by the cellulitis infection (March 2008). It is still damaged looking, and remains sore to the touch